I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Monday, March 26, 2012

Multiple Problems Facing ASD People

Today, the Interactive Autism Network (IAN), www.ianproject.org, the nation's largest online autism research initiative and a project of the Kennedy Krieger Institute, reports preliminary results of the first national survey to examine the impact of bullying on children with autism spectrum disorders (ASD). The results show that 63 percent of children with ASD have been bullied at some point in their lives. These children, who are sometimes intentionally "triggered" into meltdowns or aggressive outbursts by peers, are bullied three times more frequently than their siblings who do not have ASD.

"These survey results show the urgent need to increase awareness, influence school policies and provide families and children with effective strategies for dealing with bullying," said Dr. Paul Law, director of the IAN Project at the Kennedy Krieger Institute. "We hope that this research will aid efforts to combat bullying by helping parents, policymakers and educators understand the extent of this problem in the autism community and be prepared to intervene." (For more insights on the survey results, visit this online discussion with Dr. Connie Anderson, IAN's community scientific liaison.)

Nearly 1,200 parents of children with ASD completed the survey. Findings show that these children (ages 6 to 15 years) are especially vulnerable to bullying, and point to a number of risk factors.

But science and medicine are catching up with parents’ understanding of the condition, and a more nuanced view is slowly emerging: Autism is not just a brain problem. Many people with autism, which affects 1 in 110 American children, are profoundly unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles such as those that still occasionally plague Walt. And treating those symptoms can markedly improve the lives of autistic children, even if doesn’t cure them.

“There’s a whole slew of other symptoms,’’ besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. “A fair percentage have gastrointestinal problems, at least when they’re young, that may even outweigh the autism.’’...People with autism were once thought to be intellectually disabled as well. Goldstein said he used to think that 70-80 percent of people on the spectrum had intellectual deficits; now he believes that number is closer to 5-10 percent, or even lower. Walt, who was recently able to sit through his first IQ test, has normal intelligence, even though he struggles to communicate all he know